Stranger in Godzone gets interviewed

 Recently, Altogether Autism, an autism organisation here in New Zealand, asked to interview me, as one of their autistic voices for Autism Acceptance Month. 

Here's the result (you may have to copy and paste to get the link to work. )

https://youtu.be/iogV8ogNuHg

You Have The Right To Not Have Abusive People In Your Life

Lately I’ve been seeing on Facebook quite a few posts around the theme of choosing not to have abusive people in our lives, even if they’re other autistics – and the resulting furore, especially if the writer dares to say these people are narcissistic or similar. Some even seem to have been driven out of the community, or at least off social media, by the relentless attacks from their abusers. I’ve also received some criticism myself, either when I chose to support those making this choice, or I challenged some people’s glossing over the abuse, or from other, more private sources, because I dare to call out those who do abuse or maltreat us – something I also apply to other autistics.

So, at the risk of ‘stating the obvious’ (though it seems to some people it’s not, and we autistics don’t always ‘get the obvious’ anyway), let me make myself one hundred percent clear here, to my brother and sister autistics –

YOU DO NOT HAVE TO PUT UP WITH ABUSIVE PEOPLE.

EVER.

It doesn’t matter if they had a rotten childhood, or have been abused themselves, or had a hard life in some other way, or they are just plain old jerks.

It doesn’t matter if they have some type of personality disorder or not, if they ever had a formal diagnosis, or have never had one but fit the criteria, or have a mental health condition, or are …just jerks.

It doesn’t matter if they are autistic too, even ‘top’ advocates, or just well-known personalities.

It doesn’t matter if they’re family, or your partner, or you’ve been ‘friends’ with them for ages, or they have some other hook into you.

It doesn’t matter if they’ve surrounded you with people who support them and not you, and you know you’ll lose a lot of people if you dump them.

It doesn’t even matter, ultimately, if you’ll be financially and practically worse off without them, and that it’s going to be extremely hard to get them out of your life, and you’re not even sure how to.

In fact, in the end, nothing matters except that they are abusing, bullying and/or manipulating you, and you need to get away from them, by whatever means necessary.

And no, you’re not being ‘nasty’ or ‘unsympathetic’, not to want such people in your life. You can feel sympathy for their plight, but from a safe distance! Remember that it’s actually THEIR responsibility, not yours, to sort themselves out. Even if they struggle to do so, it’s still not your problem or your fault, and you don’t have to take them back. You don’t have to hold their hand, metaphorically speaking, while they’re steadily draining your life force. You don’t have to pay that price anymore. You have the right to set boundaries, and stick to them.

And yes, they will use any and every angle, every trick in the book, to get you back under their control again. I’ve heard just about all of them, from both those who dumped on me, similar people, and their supporters, known as ‘flying monkeys’.

Just sharing recent examples, for instance - if I went back years, there would be lots more - I’ve been told that I was ‘stigmatising’ and ‘demonising’ people with personality disorders for daring to point out how badly many of them behave, and had my words rewritten to equate having one to being autistic, though there is actually no comparison. Personality disorders are the result of damaged psyches, and you CAN heal from them, with the right treatment. They are therefore NOTHING LIKE autism, which we’re born with, and which is simply a variation on human, not emotional damage, though of course people can have a personality disorder in addition to being autistic.

Another time, I was told that I’m ‘ableist’ and ‘judgemental’ of people with personality disorders, that I shouldn’t say that they tend to be abusive as ‘only abusers abuse’. To which I pointed out that if you have a diagnosis of a personality disorder in the first place, or you fit the criteria for one, you are at far greater risk of either abusing or being abused, especially if you refuse to examine yourself and get treatment. I’m guessing that they didn’t like this much either. But I’m getting better at standing my ground with such people. (Sadly, this wasn’t always the case.)

I’ve also been told that I’m showing a ‘lack of empathy’ for those who had hard childhoods, that I’m ‘judgemental’ of those with mental health disorders (though my friends beg to differ), that I was ‘unsupportive’ of a particular critic (I guess all those hours empathising with their problems during so many of their long and frequently tedious rants don’t count), that I’m ‘claiming to be perfect’ (something I’ve never in fact said, nor ever would), told I shouldn’t write about what I’ve been through without giving those who have shat on me a ‘right of reply’, and so much more. All combined with a not-so-subtle pressure to let them back into my life so that things can be ‘sorted out’.

And so on, and so forth. I’m sure you’ve heard similar things from the abusers/manipulators/drama addicts in your life. A constant stream of distorted ‘facts’ and selective ‘memories’, all designed to break your will and wear you down. And let them back in. Always, of course, on their terms.

DON’T DO IT.

Don’t let them in. Or if they’re already (back) in, get them out by whatever means you have to. Blocking, unfriending, deleting, leaving online or IRL groups, cancelling, moving house, dropping unsupportive people and the abuser’s flying monkeys, refusing to engage, leaving town, leaving the country even, whatever it takes. WHATEVER IT TAKES.

Because you’re entitled to a decent life, one free of constant drama, criticism, bullying, verbal attacks, manipulation, and similar, a life that’s safe, peaceful, happy, and which meets your needs, and you don’t owe them anything but a heartfelt ‘goodbye!’

BECAUSE YOU’RE WORTH IT.

And you know what? The abusers deserve a good life too – just not at your expense. I sincerely hope that they get the PROFESSIONAL help they need, so that they stop treating people the way they do, but also for their own sake. I don’t wish them ill, why would I? How does that help anything, or anyone? And yes, I know that the right treatment, or indeed any treatment, can be extremely difficult to access, sometimes impossible. But until they start challenging themselves, and other abusers, to do and be better, horrible things are going to keep happening. People are going to keep getting damaged.

And we all deserve better. Better lives, better community, better everything.

BECAUSE WE’RE ALL WORTH IT.

Arohanui (much love).

That Autism 'Suffering' - Part Two

In this next part of my investigation into the 'suffering' of autistics, I look at the things autistics themselves - or in some cases the more objectively observing of their parents - put forward as the actual causes of autistic pain and suffering (as opposed to what many non-autistics believe are the causes), along with possible ways non-autistics can support and help us.

There are quite a number of them, and in this post I'll look at the 'internal' causes, those  that arise out of our 'different' way of being, and/or are closely associated with autism.

      i) Communication problems - especially if we're non-verbal, but even those who can speak sometimes have difficulties. We might 'lose our words' under stress, not be able to find the right ones, struggle to process and respond quickly in conversations, or just find it so much easier to write than speak. The use of computers, other communication devices, sign language or writing, along with simple patience on the part of others, would go a long way to help.

      ii) Auditory Processing Disorder - This is part of i). If what we hear sounds distorted or garbled, and it takes us ages to 'decode' what's been said, then we can feel stupid, embarrassed and hurt by others' reactions to this. Others can help us by speaking clearly, minimizing background noise, and waiting patiently for our responses.

      iii) Executive dysfunction - basically, we can't get our lives together. The results can be disastrous, and extremely distressing to us. We will flounder through life and ultimately fail at it - or at least feel like total failures - unless those around us help us learn how to organise ourselves. This is important not just for children, many adults on the spectrum could also do with such support.

      iv) Emotional Regulation - Many autistics have difficulty identifying, expressing and/or controlling their emotions. This can cause a great deal of suffering, especially if it triggers public embarrassment or hostility. There are various methods of helping autistics with our emotional states, including emotion charts, meditation or medication, but needed first is an understanding that this isn't a case of us just being 'spoilt brats' or 'cold and unfeeling', but a real and often painful challenge.

      v) Fear of change - Just about every autistic I know gets distressed by change. Something about our minds is too rigid to cope with it. Visual aids of various kinds are helpful, as is lots of preparation and planning beforehand, and being taught the 'Plan B' approach. Ultimately though, only repeated experience will help us develop the skills and maturity to get through changes.

      vi) Lack of social skills - Our lack of any 'intuitive' knowledge of how to interact with others, combined with inability to read non-verbal clues, means frequent social blunders. The resulting hostile reactions often cause us considerable distress. If others grasped that we are socially 'blind', and certainly don't intend to offend, and instead of condemning us quietly advised us on what, and what not, to say or do in situations, and (most importantly) why, it would assist us a great deal.

      vii) Poor Impulse Control - Impulse control seems to be a problem for many autistics, and can cause much suffering, whether it's through rushing headlong into possible danger, saying things without thinking, being unable to restrain ourselves from 'compulsive' behaviour, or even 'burning our bridges' because we've made too many mistakes, or plunging into disaster in some other way. Self-regulation is a very important skill, and one we usually need help in learning. It's difficult to learn it without such support - I speak from personal experience here.

      viii) Sensory overload - this one is tricky. The immediate causes are outer - i.e. the sensory input - but the ultimate cause is internal, i.e. our senses turned up to the max. The difficulty with managing it is twofold. One, heightened senses can also be wonderful, such as when listening to our favourite music. Two, not all the sources of over-stimulation can be avoided. It's pretty hard, for instance, to stop birds tweeting, dogs barking, or babies crying. Much relief can be found however. For example autistic students and employees could be allowed to wear sunglasses, caps, etc, in the classroom or workplace, lighting can be adjusted, and so on. Acceptance by others of the desperate need for such accommodations is crucial.

      ix) Meltdowns - These can cause us a great deal of suffering, both in the lead up to them, and in the actual experience - not to mention other people's unsympathetic or hostile reactions. We don't want them to happen, but can't always prevent them. If others understood the difference between meltdowns and tantrums, and did their best to assist us in eliminating the causes and creating safe, quiet places we can go to be alone and recover, it would go a long way to alleviating our suffering in this area.

      x) Gut/dietary problems - A lot of us have sensitive digestions. If an autistic person is having lots of diarrhea, constipation, etc, and constantly feeling or seeming unwell, then it may be worth trying different diets. Note though that even that if we don't eat, say, gluten, this doesn't mean we will magically not have autism anymore. It just means that if we're not sick, we will have more energy to deal with life and its challenges.

If my solutions to our suffering seem glib, I don't mean them to be. I know that they usually entail a good deal of hard work, on the part of the autistics themselves, and/or their parents. But what does strike me is that a change of attitude combined with practical help will alleviate our suffering far more, and far quicker, than any hyperbaric chambers or bleach enemas or worms or any of the other and often ridiculous 'cures' being touted by the autism industry.

In my next post, I will examine the 'external' or 'outer' causes of our suffering.

Why I Stand In Solidarity With The 'Low-Functioning'

I've been trying to write about this issue for several months, approaching it from various angles, and then getting bogged down and abandoning it. And yet I feel it’s a very important and often controversial one. There are many who tell apparently ‘high-functioning’ autistic adults that they ‘cannot speak’ for all autistics, because they aren't ‘really’ autistic, or are ‘not autistic enough’. There are those who say high-functioning autistics shouldn't object to how the low-functioning are treated, because we ‘can’t understand’ how ‘awful’ they make life for their caregivers and families, and it’s ‘for their own good’. And so on and so forth. And these tactics often work. I have encountered aspies who refuse to identify as ‘autistic’, because, in the words of one, “I’m not autistic, because I’m intelligent”.

Well I DO identify as autistic, AND with those ‘low-functioning’, I refuse to be separated from them, and so I've decided I’m just going to say how I feel, in an attempt to make clear my reasons why.

Reason One - Defeating the ‘Divide and Conquer’ thing. Many autism ‘experts’, parents, etc, and their organisations, take the stance that “It’s all right for you high-functioning types, but ‘these people’ have ‘real’ problems, which can only be addressed by this drastic treatment/long hours of therapy/punitive suppression/etc/etc/etc”. What this effectively says is “We’ll leave you alone as long as you can pass for ‘normal’, and as long as you don’t protest what we’re doing to ‘those people’.” It’s an unspoken but nonetheless potent threat – but also a nonsense, because –

Reason Two - There is no clear dividing line between low and high functioning. Many autistics are able to communicate via the internet, write articles and books that get published, or advocate on behalf of their fellow autistics, but cannot communicate verbally, hold down a regular job, or live independently. Others can, but only with a great deal of support from family or social services. Even those who, like me, are fully ‘independent’, function best with help from those around them. We all have problems, are prone to break down, overload, melt down, etc, etc. None of us are ‘high-functioning’ in all areas of our lives. NONE.

Reason Three - All autistics are entitled to respect, no matter what their functioning level. Many are labelled ‘low-functioning’ because of their lack of verbal speech, but if/when they finally find a way to communicate, a perfectly functional intelligence is revealed. But even if this is not the case – if they are intellectually disabled, for instance – they are still entitled to be treated well, to have all the rights that I list in my recent ‘Bill of Rights for Autistics’, as well as any other rights that, for instance, the intellectually or physically disabled have or are campaigning for.

Reason Four - I feel more in common with them than with NTs. NTs see me ‘looking normal’, and think I ‘must’ like that, must want to be identified with them, that it’s a compliment if they tell me how ‘normal’ I seem. When actually, it’s an elaborate front I've evolved to cope with life, and frequently a strain to keep up. I often feel like a fake doing it, and long to reveal more of my true self. I do not identify with NTs in general, or want to. Underneath, I know I am far more like that kid rocking and flapping in the corner than any of them suspect. Underneath, I understand why he rocks and flaps – and even do it myself, when no-one’s looking. Because -

Reason Five - There is only one autism. I’ve said this before, and I’m saying it again – at the core, we are all equally autistic. The big difference between high and low functioning is not ‘how much autism we have’, but ‘how well we can pass for normal’, ie how many social, communicative and life skills we are able to learn. If scientists, doctors, etc, really want to help autistics, they should be researching why some autistics can learn these skills, learn to talk, etc, and others can’t, what part of our brains determines this.

For my part, I can only say this.

I will not be separated.

I will not be disempowered.

I will not be silenced.

I will not have my true, underlying nature denied.

I will not stop being autistic, and championing the right of EVERY autistic to BE autistic, to be free, and to be given the human rights they so desperately need.

I stand in solidarity, and I invite all autistics, low or high functioning, to stand with me.

Autism Matters - Education on Autism, By an Autistic

http://autismsmatter.weebly.com
This website is the brainchild of a friend of mine, previously living in NZ, now back in the UK. She's developing her business of educating people and organisations about autism, from the viewpoint of an autistic - a departure from the usual parent or professional 'consultants'. So if anyone in the UK is on the lookout for someone to teach their group or organisation about autism, this is the person to contact.

Autistic People Should

By Our Selves –

Autistic People Should... embrace and celebrate their autism. It’s a core part of us, to reject it is to reject the Self.

Autistic People Should… stand tall, be proud of themselves and what they’ve achieved, even if it’s only survival in a hostile, uncomprehending world. (That deserves a Nobel prize all on its own!)

Autistic People Should… cherish themselves and love themselves as a child of the Universe, exactly as every other human being and creature on the planet is.

Autistic People Should… understand that no matter what anyone else says, and no matter what problems they undoubtedly have, there is absolutely nothing wrong with them.

Autistic People Should…. find others who are also autistic – community is the way forward, to both self-esteem and changing the world to make it better for us.

Autistic People Should… question, question, question, all the stereotypes and myths, all the ‘objective’ research (which is all too often not objective at all), all the solemn or gloomy or doom-laden or hysterical pronouncements about what autism ‘is’; they should search their own hearts, look at their autistic friends, acquaintances and/or family, and come to their own conclusions.

By Other People -

Autistic People Should… be loved and cherished by those around them. For themselves, not for who others want or expect them to be, or think they ought to try to be.

Autistic People Should… be accepted just as they are, by those around them, even if they are non-verbal, having obvious difficulties, or all too obviously ‘different’.

Autistic People Should… be respected as human beings in their own right, even if others find them hard to understand.

Autistic People Should… be accepted as a normal human variant, and catered for as such, in the same manner we now cater for other differences.

Autistic People Should… be consulted as a matter of course, on ANYTHING that directly affects them or involves them.

Above all -

Autistic People Should… know that they have the right to existence, the right to fair treatment, the right to human dignity and freedom from torture and abuse, the right to choose and direct their lives the way they want, the right to say ‘no’, the right to be as independent as possible, and above all the right to simply be their own true, quirky, lovely, fantastically individual, beautifully autistic selves.